Daily Prompt/ One Word Prompt


Write a new post in response to today’s one-word prompt.


A Genie in a bottle. The first thoughts that come into play in my mind are Multiple System Atrophy patients, caregivers, families and myself. I personally felt, like a Genie in a bottle.

One illness, five little words, one doctor’s appointment can change everything from that day on. Watching little changes become bigger changes isn’t fun. Helping with falls, recreating meal preparations, setting appointments with various doctors, rearranging rooms, taking out furniture to make room for new furniture, interviewing caregivers, looking at any programs that may help off set expenses. This is truly a Genie kind of life.

Why do I say that? Simple, very few professionals have ever heard of this disease, which makes it difficult to get the help you need. There are improvements on literature, so your power becomes stronger with reading.

Getting insurance companies to understand this is a disease that needs to be covered is a task within itself.  I felt like the Genie in the bottle. I tried and tried, but the top of my bottle just wouldn’t pop off.

What is the best thing you can do if you need help but can’t find any? Join Facebook groups for Multiple System Atrophy. There are several.

This is one of the newest groups I created. A place to feel comfortable enough to speak your mind in private.



This is one of my older groups where you come to visit, be inspired and meet other families and patients.



This is a group for caregivers. It is an awesome group to find strength and answers in others who are going down the same path as you.



This is a group formed to learn more about Multiple System Atrophy.




This is a group that I love. I found so much support here while my brother was still living. My friends from this group are still my friends today. A wonderful place to congregate.



As you know by now, my birthday is this coming Saturday. I need still two hundred dollars to meet my goal. I am requesting a $1- any amount from you, my friends to help me reach my goal of $500.00. Can you help?



I wish this terrible, nasty, roller coaster ride of a disease on not even my worst enemy. Not only will it change your life forever; there will be times when you feel like that Genie in a Bottle.







One Last Time

I wanted to  provide an update about one of the issues I have been fighting with for a couple of months. It is about Al and the huge bill at the nursing home.

He was over the limit by a few dollars which caused a delay for coverage in the beginning of the year. After trying to fight it on my own, I finally got the Ombudsman involved. It took several weeks to get an answer, but I did today.

When he started out with this debt, it was 7,000 dollars. Thanks to you and  hard work on my end I have it down to 4,000 dollars.

The problem is Al is coming home real soon. I found out today he can be home by late next week. It will cost more for groceries, utilities, etc., which will slow down the bigger payments.

The Ombudsman got back with me today. Al does owe the debt, what is left. Once Al is released, they can no longer collect from him, but they can sue me as his guardian. Although, they can not directly make me pay, I will have to find a way for Al to get money to pay it.

The sad thing is; the facility is charging him  60 dollars a month in interest. Hopefully, that amount of interest will go down each month.  I can make payments but I also have to be able to continue his funeral expenses. I have already looked into that through the government and because of the way the policy is written, it is not specified as a funeral, so they will not allot it.

I am coming to all of you once again for help. I have investigated every avenue possible. I know that after going through the legal Ombudsman, this is final. He does owe this, but I am very grateful for all who have helped thus far.

I am asking one more time, can anyone spare a little bit more? I feel so humiliated coming to you but I don’t have any more choices left. I so wish they would excuse the interest, but that is not going to happen.

I will continue to pay as I have been from monies here and there and your help, but I am asking for your help too.

The foundation takes all credit cards and PayPal. If you state it is a gift, there are no charges.

Please forgive me for coming to you on bended knee.

The foundation shows the original bill, which I have already stated is paid down now by 3,000 dollars, but the amount of days is correct for the foundation, which is 20 days.

Thank-you for reading and I just want you to know this plea has not been easy. I am used to finances being paid timely and finances being private. No one wants to hear others problems.

Please go to this link if you would care to help.


English: Logo of PayPal. Español: Logotipo de ...

Roller Coaster Ride

Wow, what a ride this has been. It hasn’t been fun like a roller coaster at Disney World, but it has definitely been a ride. Sometimes it has scared me but thankfully sleep has happened so much the fear didn’t have time to escalate.

That is one of the eerie things about being sick and living alone. What if I don’t get better? What if I need to go to the ER? What if I cough myself to death? LOL

I wrote to you earlier and told you I thought I was getting better because I had a short spell of no coughing. I was wrong. I finished the antibiotic the doctor had given me, but I was really no better. When I breathed it sounded like violin strings were playing in my lungs, but the sounds were not pretty.

I was placed on a new antibiotic and for the very first time in eight days I can breathe without hearing the strings. There is still the coughing going on but I think it is not quite as strong. I am drinking a cup of coffee, which is the first time in these past eight days. It taste pretty darn good.

I still feel pretty weak. My legs wobble when I walk but I did take a shower and managed to stay standing long enough to shave the jungle that had started growing under my arm pits. LOL

I have lost nine pounds as of this morning. I know that I have not eaten as much but I think I have worked so many muscles in the trunk area that this is where I have lost so much weight. Exercise, we must get our exercise. Did you know that I have muscles that I didn’t even know worked? LOL Abdomen muscles, wow, maybe I will become a female body builder. maxineHehe

Well anyways, I think I am beginning to recover. I still have not seen my brother but have called his facility and have asked about him. The nurses always tell me the same old thing, stay a way! We don’t want it! I bet it is my raspy voice that is scaring them off. I really hope with the weather being up towards the forties this weekend, I will be able to feel good enough to take Al his soda and snacks. Although I don’t feel well enough yet to see him, I don’t want him to go without the things that he depends on so much. So please say a prayer that I am able to drive and go see him this weekend. Hugs to all of you. I have missed you!

Continuing Story Part 35

After a few minutes of silence, Drake got up and together they left the small room and

Dahlia "Dahlstar Sunset Pink"

went back to the waiting room. The group talked among themselves as Drake shared what the doctor had told him. Rachel and Sue went to the cafeteria and brought coffee back for everyone and they watched the television and continued chatting.

Soon Drake heard his name being called by the receptionist and he got up from his seat and walked over to hear what she had to say to him. She told him that the patient he was interested in was getting ready to be wheeled into surgery, and the doctor thought that he may want to see her before being taken back.

Without acknowledging, he headed for the double doors and he was let in and went back to the doctors lounge and waited for someone to come get him. The doctor came in and motioned for him to come with him. They walked back through a narrow hall way and turned left and there was Dahlia lying on a portable bed being ready to taken into surgery.

He quickly went to her and laid his hands over hers. He bent down to her ear and told her that everything was going to be fine, that this doctor was going to make her good as new. As he was bending close, his tears were dripping on her hospital gown, and although he saw no motion of her body, nor did her eye lids move, he prayed with everything he had that she could hear him. He knelt into her lips and kissed her softly, telling her how much he loved her, and that he would be right here waiting for her return. With that, the doctor gave the orders to the technicians to take her on back. He turned to Drake and patted him on the back and said that he would do the best that he could do. Just go back to the waiting room and wait for someone to call him.

He walked around the corner and back down the narrow hall, but at this moment the hall seemed to stretch on for miles and it made him feel like it was sucking him in, never letting him out of his nightmare. He saw the double doors once again, and walked through them to where everyone was seated.

They all asked what had happened back there and he simply said that he had told her everything was going to be alright and that he would wait for her right here.They asked if she responded in any way, and he shook his head with a no response. With this everyone sat back down and the talk became less as minds were wandering from the day’s events.

About an hour later, after everyone was still or resting their heads against the back of the chairs, Ralph looked at his watch and said hey, let’s go get something to eat. Drake said immediately that he wasn’t going anywhere, that he had promised Dahlia that he would be right here waiting.

Even though leaving the hospital for a spell would have been nice, they knew that they could not change Drake’s mind, so they headed for the cafeteria and each ordered a meal. They found two empty tables and pushed them together, and there they all sat, eating in silence, watching people come and go, while all ears were waiting for the signal.

After they finished eating, they got up and walked over and threw their trash away, and Rachel suggested they step outside to get some fresh air. No one argued so they walked outside, and breathed in a big deep breath of fresh air. There is nothing like fresh air when you have been cooped up inside a hospital for some time. They all walked on the sidewalk, that led them around the entire building, trying to relax their minds and enjoy the outdoor scenery.

They had walked for about a half an hour and then headed back inside and went back to the main lobby. There were other new people sitting there now. The ER was a busy come and go room.

Another hour went by and most of them were dozing by now. The television had become boring and the ER was emptying out once again. Nurses had changed shifts, the receptionist had now left and a strange face had taken her seat.

Soon a loud racket could be heard on the PA system. Nurses were being called. A code blue was overheard, and staff were racing. Drake and Rachel and everyone else looked at each other and then the other, hoping it was not their loved one that the code blue was being screamed about. Silence fell over the room as if someone had just poured water over a fire. The hush was thick like fog, as everyone waited to see what was happening.

A staff came out and Ralph quickly walked up to him and asked him if this had anything to do with the patient who was having brain surgery, and the staff said no. It was a patient that had just been brought in. He said not to worry, there had been no word on the patient he was inquiring about.

Each of them breathed a sigh of relief as they took their positions back for waiting. They were speaking their  private thoughts out loud and each was consoling the other. Another staff came through the double doors and walked to the main part of the lobby and asked who was here for the Miss Dahlia party. All of them stood up at once, stating that they are the ones waiting for word. How is she, is she doing alright, how was the surgery, was it a success?

The staff member said that he was informed to come get them and to bring them back to another lounge that would hold all of them. Everyone got up and followed him through the double doors and turning to the right, were led into a large room that seated three couches and a few chairs. The staff said to take their seats and the doctor would be in, in a few moments. It was so quiet in the room, each could hear the clock ticking on the desk, and then the door opened, and the doctor walked in.